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Culture within Cultures: The Culture of Disability and Family Life in Japan and the United States

Summary:

In this essay, our central thesis is that special education (SPED) services function as a cultural system based on beliefs and practices shared among members of the professional and academic world. To address this thesis, we pose three questions: "What does a parent need to learn in order to be a competent member of the SPED cultural system in Japan and in the US?" "What types of policies and institutions are in place to assist parents in developing this 'insider knowledge'?" and "How do individual parents in each country experience and cope with the expectations of the SPED culture?" We conclude that, although there are some national differences, the dynamics of parenting a child with a disability operate similarly in the two countries due to the common norms and practices that define the SPED cultural system.

Many of us are used to thinking of culture in terms of the practices, beliefs, and material objects belonging to a group of people, perhaps even to an entire nation. But, increasingly, scholars in the fields of education and psychology are trying to define the meaning of culture more narrowly, to include a "community of practice" whose members may not necessarily live in proximity to each other, but who still participate in common activities and have access to certain beliefs or schemas about the world.

In this essay, we bring this newer perspective on culture to bear on the community of medical professionals, educators, and interventionists who comprise the system of special education. Our central thesis is that special education (SPED) services function as a cultural system based primarily on beliefs and practices shared among members of the professional and academic world. As with any cultural system, the values and normative practices associated with the SPED system are well known and often taken for granted by its participants. However, we would argue that parents of children with disabilities can be cultural "outsiders" who must acquire specialized knowledge in order to participate in and benefit from the SPED cultural system. By understanding the experience of parents as they try to become competent members of the cultural system, SPED cultural "insiders" will achieve a better understanding of the barriers parents face and the forms of institutional and personal support that are likely to help them overcome these barriers.

As the title of our essay implies, we are interested in how the SPED cultural system operates within the larger cultural systems associated with the nations of Japan and the US. We are uncomfortable characterizing an entity as complex as a nation in terms of a unitary cultural system. Nevertheless, for the purpose of this essay, we argue that Japanese and American parents are exposed to specific values and practices with respect to perceptions of the role of parent and professionals, ways of coping with stress, and the function of family support. These values and practices have evolved historically within each country and are in some ways unique and in some ways similar to those that predominate in other nations. While parents in either country might well decide not to accept the available norms and practices, it is likely that many of them do so and thus it is worthwhile to engage in a country-wide analysis.

So, the first question becomes, "What does a parent need to learn in order to be a competent member of the SPED cultural system in Japan and in the US?" And, secondly, "What types of policies and institutions are in place to assist parents in developing this 'insider knowledge'?" To address these questions, we begin with a brief overview of parents' roles as defined by the SPED cultural system in the US and Japan. We then describe - for each country - the institutional supports available as well as barriers to parents' ability to engage in the practices expected of them.

Our third question is, "How do individual parents in each country experience and cope with the expectations of the SPED culture?" We provide an overview of the evidence pertaining to coping strategies and family social support in the two countries. We conclude with the assertion that, although there are some national differences in role expectations, coping strategies, and sources of support available to parents, the dynamics of parenting a child with a disability operate similarly in the two countries due to the common norms and institutional forces that define the SPED cultural system.

Parents' Role in the SPED Cultural System in the US

In 2002, 9.2 percent of the school-aged population in the US received SPED services under the Individuals with Disabilities Education Act (IDEA), a federal law regulating services for children with disabilities. A fundamental aspect of the IDEA is that parents and professionals should form a partnership, a relationship that benefits all parties (families, children, professionals), in which everyone capitalizes on the expertise and knowledge of each other and which is based on trust and respect.

In the US, parents involved in the SPED system are also expected to act as advocates for their children with disabilities in order to secure appropriate educational services. The notion of advocacy is used to characterize a wide range of activities from requesting that the school evaluate one's child to pressuring local governments for better funding of SPED services. In reality, advocacy often leads to conflict between a parent, who represents the needs and rights of an individual child, and a medical or education institution, which is protecting its own existence and the rights of all the children it serves. Thus, there is often a tension between acting in partnership with the institution and advocating for one's child when the institution is perceived as withholding needed resources.

In some cases, parents of children with disabilities are also expected to function as teachers or interventionists with their children. For instance, parents of children with disabilities might be asked by a therapist to identify and describe their children' behaviors in a clinically meaningful way as part of assessment procedures. Or, therapists may teach parents to carry out complex skills that they are in turn expected to teach to their children at home (e.g., to communicate with a nonverbal child using a picture exchange system).

Parents' Role in the SPED Cultural System in Japan

According to data collected by Japan's Ministry of Education, Culture, Sports, Science, and Technology (MEXT), approximately 2 percent of the school-aged population was receiving services either in a regular or SPED classroom in the year 2006 (http://www.mext.go.jp/a_menu/shotou/tokubetu/001.htm). As in the US, there has been a shift during the last three decades in how individuals with disabilities are cared for in Japan. In 1985, the Japanese government reversed a longstanding policy of institutionalizing children with severe disabilities to encouraging families to care for the child at home. However, few resources were provided to enable parents to provide adequate care for these children. And until very recently, the Japanese government has been hesitant to recognize the educational needs of children with less severe disabilities (e.g., learning disabilities) and so these children were included in regular classrooms with no additional support. However, beginning in the 2006-2007 school year, following a revision of the School Education Act (SEA), pilot efforts have been put in place to provide services to these children in the regular education context. Most relevant to our discussion is the fact that, under the SEA, schools and service providers are required to incorporate parents' opinions in order to determine types of educational and medical services that would meet their child's needs.

But how much assistance does the government in each country give parents to help them enact these important roles? We turn next to a discussion of this question.

Barriers to Partnerships and Advocacy in the US and Japan

In recent years, research has documented the positive impact of involving parents in decision-making about their children. For example, a recent meta-analysis of 47 studies conducted in a variety of Western countries by Dunst and his colleagues found that parents who participated in family-centered programs expressed more satisfaction with the staff and services received and reported increased family well-being.

In spite of the official rhetoric about partnerships, they are very difficult to attain in both countries, but particularly so in Japan. Overall, parents in Japan may be unsure about how to establish a less hierarchical relationship with SPED service providers because of deep and longstanding institutional norms and discourses governing the interactions between professionals and "lay" individuals. Japanese parents may also be more likely to expect the professionals to understand their needs without having to make them explicit. Additionally, there is some evidence that the SPED system in the US provides more support for parents than does the Japanese system. Many American SPED agencies organize trainings to teach parents how to access services or how to use the legal system in their children's benefit. In contrast, in Japan, the SEA does not clearly specify the kinds of actions and rights parents can/should claim if there is a disagreement between them and the SPED system. Because, in reality, the SPED system in Japan strongly emphasizes the powerful position of professionals and service providers over parents, it is extremely challenging for Japanese parents to fight for the rights of their children when they feel that the system is not serving them effectively.

Furthermore, the partnership ideal articulated in Japan and the US does not acknowledge the reality that in both countries, parents with a more extensive educational background, ample free time, and economic capital are better able to learn about their child's disability, engage in dialogue with professionals, and navigate the SPED system. As has been clearly documented in the case of the US, children whose parents have fewer resources often receive fewer and lower quality services than do those whose parents are more privileged.

Stress, Coping, and Support

As psychologists, our research team is particularly interested in how parents respond to the challenges involved in having a child with a disability and working within the SPED system. In Japan and the United States, mothers are typically the family members who undertake the majority of care for children with disabilities. There is now a significant body of research examining 1) what are the stressful as well as positive aspects to mothers of having such a child; 2) how mothers cope with these stressors; and 3) what the role is of other family members in caring for the affected child and supporting the mother. We now turn to a brief review of this literature, along with suggestions for further research.

Japanese and American mothers report similar perceptions regarding the stressful aspects of having a child with a disability. For mothers in both nations, the stressful aspects of having a child with an intellectual disability are related to the children's health and behavior problems, as well as social isolation. They also reported having difficulty communicating with service providers. For mothers whose children were suspected of having autism spectrum disorder, the ambiguity of the diagnosis process itself was a stressor.

Similarly, Japanese and American women report that one of the most important resources was the support provided by a spouse. In Japan, numerous studies have documented that when husbands are actively engaged in parenting a child with a disability, mothers feel much less distress than when fathers are not engaged. The extent to which Japanese mothers feel distress is also related to the level of marital intimacy. In the US, mothers feel less stress, greater parental empowerment, higher levels of marital satisfaction, and a greater sense of family well-being when their partners are actively involved in caring for the child with a disability.

One socio-cultural difference between Japanese and American mothers is that Japanese mothers may experience a greater feeling of alienation due to the stigma associated with intellectual disability and mental illness, including a lack of social understanding about the causes and manifestation of these conditions. Another primary difference between Japanese and American women pertains to their coping strategies. In each country, women employ a variety of coping strategies, and their choice of strategies is in part determined by their individual circumstances and personality. However, it appears that Japanese women are more likely than Americans to draw upon emotion-focused coping strategies such as redefining the stressful situation and seeking to accept the stressor, while American women are more likely than Japanese to adopt problem-focused coping strategies, including demanding better services or seeking support from friends or neighbors.

Conclusions and Future Directions

In their prescient work, Kalaynpur and Harry have discussed how American researchers have often neglected to study the role of socio-cultural factors as a force shaping family response to having a child with a disability. According to these authors, disability often "trumps" culture when it comes to characterizing such families. In this essay, we have tried to move the field toward a more nuanced understanding of how the SPED cultural system interacts with various norms and practices that are available to parents in the nations of Japan and the United States.

Thus, on one hand, we have emphasized that the SPED cultural systems that have arisen in Japan and the US are similar in terms of their ideals as well as the existence of barriers to achieve those goals. In both societies parents hope to become partners with professionals, but that reality is difficult to achieve due to an imbalance in knowledge, time, and social power. And in both societies, support from informal sources is crucial to supplementing the services provided by educators and medical professionals.

At the same time, we have also argued that the strong emphasis on the superior position of professionals over parents in Japan makes it particularly difficult to achieve the expectations of partnership and parental advocacy. We have suggested that there may be socio-cultural differences in how disability is defined in the two countries. And we have seen that forms of coping that focus on emotional self-control rather than problem-solving approaches may be more prevalent in Japan.

Future work can contribute to a better understanding of the ramifications for parents of being "outsiders" in the SPED cultural system and "insiders" in a particular racial/ethnic/national community. It would be very valuable to engage in socio-cultural studies that can inform practitioners as to how parents vary in their beliefs about disability, their concepts about the nature of family and community support, and their use of professional services. This approach will help the field move beyond conceptualizing disability as a stressor, and help develop a clearer sense of how it is conceptualized by parents. Similarly, this approach will focus on the social processes by which families adapt to the serious as well as mundane problems of daily life rather than only looking at the coping responses of individual family members in accordance with their sociocultural context. We look forward to the next decade of research in this important and exciting field of study.